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Conversations

I don’t have autism, but in my life I’ve encountered many people who do. On one level, the different ways the human brain can function fascinate me, just as the shoddy science that goes on in this field infuriates me. On another level, some of them, at least, are just my friends.

Shanti is the closest friend with autism I have. She’s high-functioning, smart and funny and she blogs at Platform 25. We’re gig buddies sometimes (you should hear about our adventures at Bob Log III). She’s a talented photographer and a fellow science and science fiction geek. We have a lot in common and we’ve talked a lot about autism as well as many other topics.

Our most recent conversation was on Facebook and Shanti initiated it by asking me about Communication Shutdown. Even though I don’t have autism I wanted to blog about this, and reproducing a conversation (ETA: with permission!) is on one level a very lazy blog post. But on another, it’s perfect. Because it just proves the point that we agreed on. So here it is.

Shanti: What do you think about Communication Shutdown? I think it’s good to raise awareness about autism and have more money for educational services but I’m not sure about the whole ‘cure autism now’ thing. I’m all for curing severe autism because the parents go through so much and services are poor, even in today’s society…. But it does make think that people think that autism is only negative. Even in severe autism they have their own talents.Then again it does give me a lot of issues. But without it would I be into photography/ physics/ story writing/ astronomy / art at the intensity that I am? No. Everyday I learn something new and that’s great. Then again I do have that ADHD thing.I think there should be more awareness for autism and unemployment. How about a ‘give your job to an autistic day?’

Rivqa: Well… I see this type of campaign as trite – how can an NT possibly have any inkling of what it’s really like? Not using social networks may be a modest sacrifice, but it wouldn’t give me insight into the communication difficulties that …people on the spectrum face.

As for raising awareness, I’d question the value of that really. Autism is a well known condition now; education about the reality of it is needed, yes, but again, an event like this won’t add much to that.

I agree that the issue of a cure is sticky. It’s also unrealistic for a complex range of conditions and I think it would be better to focus on treatment that doesn’t rob people of their individuality, but that helps them function better. Education for broader society, better services, and high-quality research (Wakefield can shove it).

I think this is exactly what you’ve identified in yourself: there are the good bits of high-functioning autism, and there are the challenges. Employment is a really good measure of function, and that’s far more important than messing with people’s neurons.

Shanti: Also, autistics use social networking to better communicate.So, you’re more towards ‘Education not Eugenics’ too? I think on Nov 1 we should change our status to that. I’ve got some good material on Eugenics in the 1920’s and not just from… Nazi Germany.I think if an NT wants to understand what it’s like to be autistic they should lock themselves in their room and not talk to anybody. Then they can try to amplify every sound. Then rub sandpaper all over their skin.

Anyway, I got only 2 hours to find the Andromeda galaxy.

Rivqa: I am, but not in a way that sugar coats what it means to have autism, especially severe autism. Difference is OK. Suffering isn’t.

Take some pretty pictures of Andromeda.

Shanti: Totally agree. I’ve also talked to people on the severe non-speaking end of the spectrum to see what they think about it. One is content to sign or use a sort of net book to communicate. She doesn’t think she’s missing out on being social b…ut she has extreme meltdowns and tactile sensitivity. And I hate my tactile sensitivity and my short tempers. But what I go through isn’t as bad as what she goes through.

I can’t photograph Andromeda. I need more pro equipment but it was good to see it through my telescope, as well as a nebula and Hartley’s comet.

Rivqa: Yes, obviously people are going to want different things. I don’t think any movement should force a cure (if it even existed) on anyone who didn’t want it. But I also don’t think a movement should prevent anyone from taking one if they wanted it.

One day I will visit your neck of the woods so you can show me stuff through your telescope.

2 thoughts on “Conversations”

I theorized in my own work that under the fear of disability is moreso the fear of “difference” which is actually a very normal human reaction (needed for survival in our ancestor’s time). What ever we grow up with or what ever way we have lived our lives is what see feel is “normal” for us. If you are autistic, then that is “normal” for you; if not, then not being autistic is normal.

Those who have power in society set the norms and we live in a majority rules mentality. So since more people don’t have autism than do, the non-autistic way of life is what is seen as “normal”. It’s all really fallacious when it’s picked apart and people come to realise the power of paradigms, but nonetheless they are real structures that affect our agency.

The fear of a cure is really the fear of life being different from what you have known it to be. One is not morally better than the other, but one will fit in better with the dominant social expectation and paradigm of “normality”.